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  • Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review

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Paediatrics
Protocol
Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review
  1. Linda Nguyen1,
  2. Jael Bootsma1,
  3. Briano Di Rezze1,
  4. Susan Jack2,
  5. Marjolijn Ketelaar3,4,
  6. Jan Willem Gorter5
  1. 1School of Rehabilitation Science and CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada
  2. 2School of Nursing, Department of Health Research Methods, Evidence, and Impact, and Offord Centre for Child Studies, McMaster University, Hamilton, Ontario, Canada
  3. 3Centre of Excellence for Rehabilitation Medicine, UMC Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands
  4. 4CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada
  5. 5CanChild Centre for Childhood Disability Research, Department of Pediatrics and School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada
  1. Correspondence to Linda Nguyen; nguyel7{at}mcmaster.ca

Abstract

Introduction Siblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and psychological outcomes of the siblings. There is a need to synthesise existing evidence and enhance our understanding about programmes for siblings to acquire knowledge, develop skills and become empowered that can help them to provide support to their brother or sister with a neurodisability. The objective of this review is to identify and map the characteristics and outcomes of programmes designed to prepare siblings in their future roles to support their brother or sister with a neurodisability.

Methods and analysis This review will be conducted using the Joanna Briggs Institute methodology for scoping reviews. An integrated knowledge translation approach will be used by partnering with the Sibling Youth Advisory Council comprised of siblings of individuals with a disability throughout all review phases. Databases to be searched include PsycINFO, Cumulative Index of Nursing and Allied Health Literature, Sociological Abstracts, Education Resources Information Center, EMBASE, Web of Science, MEDLINE (Ovid) and SPORTDiscus, from date of inception to November 2020. Studies of programmes designed for siblings of individuals with neurodisabilities, with no exclusion on the age of siblings or context, and published in English will be included. Extracted data will include details of programme structure and content, eligibility criteria and participants, context, study methods and outcomes. A summary of the results will be presented in a tabular form to provide an overview of the programmes with an accompanying narrative summary to address the research questions of this review.

Dissemination Findings from this review will be shared using dissemination strategies in partnership with the Sibling Youth Advisory Council. We will share the findings with key stakeholders such as healthcare providers, researchers, and patient and family advocacy groups.

  • developmental neurology & neurodisability
  • paediatrics
  • education & training (see medical education & training)
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2021-053184

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    Footnotes

    • Twitter @lindaa728, @@BootsmaJael, @@jacksm08, @@MarjolijnKetela, @Dr_Gorter

    • Contributors LN, BDR, SJ, MK and JWG contributed to the conceptualisation of the review; and LN, JB, BDR, SJ, MK and JWG contributed to its design. LN drafted the manuscript, and all authors were involved in the revisions, reviewed the manuscript and provided their final approval.

    • Funding This review is funded by the Canadian Institutes of Health Research Patient-Oriented Research Award—Transition to Leadership Stream—Phase 1 held by LN. The partnership with the Sibling Youth Advisory Council is financially supported by the Graduate Student Fellowship in Patient-Oriented Research through the CHILD-BRIGHT Network held by LN. The Scotiabank Chair in Child Health Research is held by JWG.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.